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Dialysis issues....

I'm very frustrated with my mom. She is in the hospital again and it's mostly her own fault this time because she's not staying on the machine the long enough to get her full treatments. She demands to be taken off anywhere from 30 minutes to over an hour early.

She went into the hospital with difficutly in breathing and it wasn't getting any better, nothing showing up on the x-rays....so when she had her dialysis in the hospital on Tuesday, they pulled off 8 kilos (about 18.5 pounds) of fluid. She could breathe after that and is doing very well now.

My mom has never wanted to share my time - through out my life. We used to fight because I wanted to do after school activities and was very active in color guard and band. I have spent my entire life taking care of her....but when she's in the hospital she knows I will come every night after work to see her and see how she's doing. When she's at the nursing home, I go 3 evenings and 1 full day to be with her.

I suck at setting boundaries with my mom, and telling her no. It's taking a toll on my relationship with my husband. We fight about it a lot, which I feel is unfair (I didn't say a word about the time he spent with his parents when they were ill and even drove over the road by myself for over 3 months so he could be at home with his dad.) - but that's another story...

We are going to be going out of town on May 12th and won't be back until May 19th. It's our honeymoon that we never got and our second wedding anniversary.

I feel like a tug toy between my mom and my husband. Neither one wanting to be understanding of my time....or the need for time for me!

I am so sorry to hear about your difficulties...I know it can be really frustrating. I hope that you're able to set some boundaries with your mom for the protection of your marriage and sanity if nothing else. I've discovered that as women a lot of times people expect us to be it all and do it all. Once I decided not to get caught up in being a superwoman I relieved so much stress from my life. Enjoy your trip and I hope that you and your husband have a great time!

I'm sorry you having such a difficult time. Have you talked to her nephrologist about a different type of dialysis - maybe peritoneal? If she were able to have it done at night while she is asleep, it might be easier to get her to cooperate. Unfortunately, as long as your mom knows she can "guilt" you into coming to the hospital every time she is there, it's going to be very hard to set any kind of boundaries. I wish there was something constructive we could offer besides our sympathy - it doesn't seem like much when you are having such a hard time.

Sometimes it helps to just be able to vent and have someone understand the frustration and the feeling of helplessness I guess.

When she first started dialysis, we discussed PD and I don't believe she was a candidate for it, but I can certainly check into it again. Especially now that she's in a facility where nurses would take care of it.

I also spoke with the nursing supervisor yesterday, and she figured out that my mom may be doing this for my attention...not intentionally maybe, but subconsiously.

She seems to lose track of time and be confused about how long she's on the machine too, so we are going to send a clock to dialysis with her so they can mark when she started and when she will get off. That way maybe she won't think she's been on the machine for 6 hours and it's really only been 3.

I really don't know what else to do to help her. We've tried books on tape, and she doesn't listen to them. She has a tv and headphones...which when she gets back to her room all she does is sit and watch TV. I'm not sure what the issue is there.

Maybe the doctor could order a mild sedative to give to her before she starts each session - it's often done with children to help them tolerate the procedure, and it might make her less agitated and willing to stay on the machine. I hope you are able to find some answers soon - I know this is incredibly frustrating. We're having sort of the same problems with my dad - he's got CHF and doesn't like taking meds. So he feels lousy and can't breathe, and we get frustrated because we know he would feel better if he would just stay on the meds. Then he gets mad because we nag - it's like an endless cycle. I don't have an answer for either of us, but I do relate. And will continue to keep you and your mom in my prayers.

Kokopelli, I'm sorry you're being caught in the parental 'squeeze play.' I know how it feels, having just been there. It's easy for someone else to say that you need to set boundaries. It's hard not feel guilty, if guilt is something that's been woven into your relationship with your parent. You play the same tapes over and over in your head - I know - I've heard those tapes myself! Do you have a support group for care givers in your area? This is one of the topics that they discuss a lot - it's a really common thread. You might find some good ideas on how to help your mom cope without giving up all of your own time. I wish you well, Kokopelli, and hope that you can find a balance. We're here for you - vent all you need to!

Jody

"If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

I'm SO sorry that you are going through such a hard time with your mother at the moment, but please know that both you and your mother are in my prayers... I'm sorry that I don't have any good advice for you...

Setting Boundaries

Boy, do I understand the trouble in setting boundaries around mothers...

Your marriage should (in my opinion) come before your mom. Yes, your mom should maintain an important place and priority, but your husband should be first.

During this time, you might want to tell your husband how torn you feel--how hard this is--and how you want to put him first. (To reassure him.) Then sit down with a calendar and figure out a schedule that is okay for both of you.

There are books out there that will help you set good, healthy boundaries. For me, they were very helpful.

Thank you for your words and input. My mom has never wanted to share my time with anyone or anything. We do have a schedule and I try very hard to stick to it. The exception is when she's in the hospital. Then I stop by every day but don't generally spend a lot of time.

Our schedule is Tues, Thurs, Sat evenings (generally from 5:00ish to about 7:30 or 8:00) and then half the day on Sunday (generally from about 2 or 3:00 until 7:30ish). I would like to cut that back.